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Deaths and complications due to treating the fake disease known as “chronic Lyme disease”

Alternative practitioners invent and treat fake diseases like adrenal fatigue and chronic Lyme disease. Unfortunately, as a recent CDC report on complications due to treating chronic Lyme disease with long term antibiotics shows, treating fake diseases can cause harm and, in some cases, even kill.

In pseudomedicine, fake diseases predominate. Basically, fake diseases are diseases that do not exist in conventional medicine as diagnostic entities because there does not exist sufficient sufficient evidence to support them as one or there exists compelling evidence that they are not. Naturopaths, for instance, like to diagnose people with “adrenal fatigue,” which is one of the prototypical “fake diseases.” Basically, it involves a constellation of vague symptoms that may include a combination of several of the following: fatigue, inability to handle stress, cravings for salty foods, difficulty getting up in the morning, and more. Basically, the idea is that the adrenal glands have become “fatigued” and thereby unable to produce adequate quantities of hormones, primarily the glucocorticoid cortisol, due to chronic stress or infections. Of course, there is no such thing as “adrenal fatigue.” It is not an accepted medical diagnosis. That hasn’t stopped a veritable industry devoted to selling “adrenal supplements” and other quackery to treat this nonexistent condition from cropping up.

Chronic lyme disease is another prototypical fake medical diagnosis. This should be contrasted to Lyme disease, which is a real diagnosis and a real disease caused by the tick-borne bacterium Borrelia burgdorferi. Lyme disease symptoms include fever, headache, and fatigue, and it’s characterized by a skin rash known as erythema migrans. The diagnosis of Lyme disease is based o nits symptoms, physical findings (e.g., the characteristic skin rash, which looks like a bull’s eye), and a history of being in an area where exposure to ticks is possible. Laboratory testing can be helpful if appropriate tests are used appropriately. In the case of Lyme disease, that usually includes a two-step process to test the blood for the presence of antibodies against the bacteria that causes Lyme disease, the first step being an enzyme immunoassay, which, if negative rules out Lyme disease. If the first step is positive or indeterminate, then an immunoblot test (Western blot) is performed, and results are considered positive only if both tests are positive. If not treated, Lyme disease can spread to cause meningitis, carditis, neuropathy, or arthritis. The usual treatment for Lyme disease is 2-4 weeks of antibiotics, which is highly effective.

Alternative medicine practitioners claim that Lyme infection can become chronic and attribute a vague constellation of symptoms not unlike the vague constellation of symptoms attributed to adrenal fatigue to chronic Lyme infection, a condition they commonly refer to as chronic Lyme disease. It’s not all just alternative medicine practitioners, though. A group of physicians who like to refer to themselves as “Lyme literate” physicians describe patients whom they believe have persistent B. burgdorferi infection, claiming that the condition requires long-term antibiotic treatment.

Now, there is a condition known as posttreatment Lyme disease syndrome, which is the proper term for patients with a verified previous B. burgdorferi infection who experience fatigue, arthralgias, or other symptoms six months or more after antibiotic treatment when all other conditions have been ruled out. However, there is no evidence that this syndrome is caused by chronic B. burgdorferi infection, nor is there any good evidence that prolonged treatment with antibiotics benefits patients with persistent symptoms after treatment for Lyme disease—quite the contrary, actually. At least five five randomized, placebo-controlled studies have shown that prolonged courses of IV antibiotics do not improve long-term outcome for patients with a diagnosis of chronic Lyme disease (e.g., this one). The evidence is about as solid as evidence gets in science-based medicine that prolonged courses of antibiotics do not help these patients and in fact harm them. Yet these “Lyme literate” physicians and a coterie of naturopaths treat patients with symptoms after Lyme disease for weeks, months, or even years of antibiotics, and there are many known complications to long term antibiotic treatment.

These potential complications have been illustrated in a recent article in the CDC’s Morbidity and Mortality Weekly Report (MMWR), Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease. The report begins:

The term “chronic Lyme disease” is used by some health care providers as a diagnosis for various constitutional, musculoskeletal, and neuropsychiatric symptoms (1,2). Patients with a diagnosis of chronic Lyme disease have been provided a wide range of medications as treatment, including long courses of intravenous (IV) antibiotics (3,4). Studies have not shown that such treatments lead to substantial long-term improvement for patients, and they can be harmful (1,5). This report describes cases of septic shock, osteomyelitis, Clostridium difficile colitis, and paraspinal abscess resulting from treatments for chronic Lyme disease. Patients, clinicians, and public health practitioners should be aware that treatments for chronic Lyme disease can carry serious risks.

Noting:

Chronic Lyme disease, on the other hand, is a diagnosis that some health care providers use to describe patients with a variety of conditions such as fatigue, generalized pain, and neurologic disorders. Many of these patients have experienced significant debilitation from their symptoms and have not found relief after consultation with conventional medical practitioners. As a result, some seek treatment from practitioners who might identify themselves as Lyme disease specialists (“Lyme literate” doctors) or from complementary and alternative medicine clinics, where they receive a diagnosis of chronic Lyme disease (3,7).

A diagnosis of chronic Lyme disease might be based solely on clinical judgment and without laboratory evidence of B. burgdorferi infection, objective signs of infection, or a history of possible tick exposure in an area with endemic Lyme disease (1,7). There is a belief among persons who support the diagnosis and treatment of chronic Lyme disease that B. burgdorferi can cause disabling symptoms even when standard testing is negative, despite evidence that the recommended two-tiered serologic testing is actually more sensitive the longer B. burgdorferi infection has been present (6). Some practitioners use tests or testing criteria that have not been validated for the diagnosis of Lyme disease (1). A significant concern is that after the diagnosis of chronic Lyme disease is made, the actual cause of a patient’s symptoms might remain undiagnosed and untreated (3,8).

This is how pretty much every fake disease is diagnosed, particularly the part about “specialty” laboratories using non-validated testing methods and diagnostic criteria. (Again, echoes of adrenal fatigue.) The consequences of such diseases can be dire. Indeed. I remember an article last year about a woman with multiple sclerosis who sought out a Lyme-literate doctor and was given a diagnosis of chronic Lyme disease. She never went back to her conventional doctor and instead continued to be treated for chronic Lyme disease. Not surprisingly, she continues to have symptoms of multiple sclerosis, because her disease is untreated. Who knows how many patients out there with real medical conditions that are hard to diagnose and treat (like MS) are on long term antibiotics for chronic Lyme disease?

Some even die from complications related to their “therapy”:

A woman in her late 30s with fatigue and joint pain received a diagnosis of chronic Lyme disease, babesiosis, and Bartonella infection by a local physician. Despite multiple courses of oral antibiotics, her symptoms worsened, and a peripherally inserted central catheter (PICC) was placed for initiation of IV antibiotic treatment. After 3 weeks of treatment with IV ceftriaxone and cefotaxime, the patient’s joint pain continued, and she developed fever and rash. She became hypotensive and tachycardic and was hospitalized in an intensive care unit, where she was treated with broad spectrum IV antibiotics and required mechanical ventilation and vasopressors. Despite maximal medical support, she continued to worsen and eventually died. The patient’s death was attributed to septic shock related to central venous catheter–associated bacteremia.

That’s right. “Lyme literate” doctors sometimes place long-term intravenous access in order to administer antibiotics. Yet long-term indwelling intravenous catheters have complications. They clot. They become infected. Sometimes those catheter-associated infections result in fatal sepsis, as in the case above. Infections are less common than clotting problems (and pretty uncommon in PICC lines), but when the benefit of the treatment is zero, as it is for long term antibiotics for chronic Lyme disease, then what we’re dealing with is all risk, no benefit, and even if they don’t die of their infection, the sequelae can be very serious, as this other case described in the MMWR report, an adolescent girl who received several months of oral and IV antibiotics and suffered an infection of her PICC line:

One week after antibiotics had been discontinued, the patient developed pallor, chills, and fever to 102.9°F (39.4°C); after consultation with the alternative medicine clinic, she was given another dose of ceftriaxone through the PICC. Later that day she was evaluated in an emergency department with fever to 105.3°F (40.7°C), hypotension, and tachycardia consistent with septic shock. Blood and PICC tip cultures grew Acinetobacter spp. She was hospitalized in an intensive care unit and required vasopressors as well as broad-spectrum antibiotics to treat the infection. The PICC was removed, and the patient was eventually discharged after several weeks of hospitalization.

Yes, seven weeks in the hospital, much of it in the ICU. It never ceases to amaze me how alternative practitioners castigate conventional medicine for administering treatments that have side effects and then think nothing of co-opting such treatments, even placing indwelling catheters that can become infected, in order to administer the products of big pharma unnecessarily, as most of the cases discussed in the MMWR report show. One of these patients developed osteomyelitis and a paraspinal abscess that required surgical drainage.

However, catheter-associated infections are not the only risk of long-term antibiotics, although they are one of the most potentially deadly. “Lyme-literate” doctors might claim that the complications above were due more to the catheter than to the long term antibiotics, but long term antibiotics generally require the placement of an indwelling catheter, be it a PICC line, a Hickman, a Broviac, or a subcutaneous reservoir like a Mediport. One complication that is straight up due to antibiotics is Clostridium difficile colitis. C. difficile colitis is a complication that can occur from nearly any antibiotics, although it is more common with clindamycin, and it can occur after oral antibiotics, no IV antibiotics necessary.

Consider this tragic case:

A woman in her 50s developed progressive weakness, swelling, and tingling in her extremities and received a tentative diagnosis of chronic inflammatory demyelinating polyneuropathy. Despite various treatments over a 5-year period, her symptoms did not substantially improve, and a diagnosis of amyotrophic lateral sclerosis was made.

The patient was subsequently evaluated by another physician and was told she had chronic Lyme disease, babesiosis, and Rocky Mountain spotted fever. Initial treatment with herbs and homeopathic remedies had no effect. She was treated with IV ceftriaxone and oral trimethoprim-sulfamethoxazole, acyclovir, fluconazole, and tinidazole. After 7 months of intensive antimicrobial treatment, her pain improved, but the weakness worsened. She discontinued treatment after developing C. difficile colitis that caused severe abdominal cramps and diarrhea. The C. difficile infection became intractable, and her symptoms persisted for over 2 years, requiring prolonged treatment. The patient subsequently died from complications of amyotrophic lateral sclerosis.

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease affecting motor neurons. There is no cure, and there are only two FDA-approved drugs that I am aware of that slow the progression of the disease. Neither prolong life that long, and the one that was recently approved, Radicava, costs $145,524 a year and has not yet been shown to prolong survival. Reading between the lines, one can imagine that this woman might have been in denial over her diagnosis, given that ALS is a relentless and terminal disease with no good treatment that arrests the progress of the disease, leaving supportive care as the only option. One might imagine that the diagnosis of chronic Lyme disease gave this woman hope that maybe she didn’t have an invariably fatal disease after all. Instead of the hoped-for result, she continued to deteriorate and had to deal with chronic C. difficile colitis for the rest of her unfortunately short life, decreasing the quality of her remaining life significantly. One can only imagine dealing with the abdominal pain, diarrhea, and fevers associated with C. difficile as one becomes progressively weaker and less able to control one’s muscles.

Skeptics like to point to homeopathy as the ultimate quackery. I even like to refer to it as “The One Quackery To Rule Them All.” However, most homeopathic remedies other than the ones contaminated with other substances or drugs are basically water. They don’t help, but they usually don’t cause significant harm themselves, other than being ineffective. (Their ineffectiveness allows whatever disease is being treated to progress.) The treatment of chronic Lyme disease is different and much worse. It involves not only serious problems like the selection of antibiotic-resistant bacteria, but injuries related to unnecessariy procedures, sepsis due to bacteremia, vein clots, and missed opportunities to diagnose and treat actual underlying diseases and conditions. The MMWR report notes that number of people who undergo treatments for chronic Lyme disease is unknown, as is the number of complications that result from such treatments, noting that systematic investigations “would be useful to understand the scope and consequences of adverse effects resulting from treatment of persons with a diagnosis of chronic Lyme disease.” Unfortunately, belief in the entity known as chronic Lyme disease is very cult-like. No matter how large the number of people undergoing unnecessary and prolonged antibiotic treatment, no matter how many people suffer complications of that treatment, ranging from minor to severe to death, I doubt that it will stop the quacks who call themselves “Lyme literate physicians.”

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

145 replies on “Deaths and complications due to treating the fake disease known as “chronic Lyme disease””

The pop-up ad next to your article is for a “lyme literate” doctor!

I’ll never forget the person I heard about. A woman claimed: 1) she got Lyme disease from mosquitoes in the Bahamas then 2) sexually transmitted it to her spouse and 3) perinatally transmitted it to her child. She was requesting year-long IV antibiotic treatment for all 3 of them, despite having negative tests. Of course, they were all seeing an (in)famous Lyme Literate doctor in our state (cash only! People had to pay him then submit the bills to health insurance for reimbursement…thousands of dollars for each treatment).

The reason many cases of chronic Lyme disease are resistant to long-term, high-dose antibiotics is due to co-infections with other tick-borne disease. It’s common to see three or four co-infections, each requiring a different antibiotic. This is easily confirmed by observation using dark-field microscopy. With the rising level of ticks in highly populated areas, it’s likely we’ll see a record level of Lyme and other tick-borne infections this year.

http://www.dailymail.co.uk/health/article-4622502

The article you linked describes more ticks than normal this year in New England, but please tell us more about all these co-infections. When you say “dark-field microscopy”, are you talking about live blood cell analysis?

Mark Thorson: The Daily Mail is not a reliable source for… well, for anything.

“However, most homeopathic remedies other than the ones contaminated with other substances or drugs are basically water. They don’t help, but they usually don’t cause significant harm themselves, other than being ineffective.”

That overlooks the fact that some patients rely on homeopathy in place of real medical care, which is *obviously* harmful.

In fact, in one case, a patient with cancer died after she refused to undergo surgery and chemotherapy for her cancer, after having been told by a homeopath that homeopathy could cure her cancer. The homeopath for months dissuaded the patient from undergoing any real treatment, and even convinced her not to take pain medication despite the fact that she was in agony. Even when the patient’s tumor had grown so large that it had caused a bowel obstruction, and the patient was facing a horrific death within a few days if she did not have emergency surgery, the homeopath still tried to convince the patient not to seek emergency treatment.

The patient finally sought medical attention at that point and underwent emergency surgery for her bowel obstruction, but by then, it was too late, as the cancer had metastasized, and she died about 2 years.

So, while there is no direct harm from the homeopathic “remedies” themselves, since they are just water, there *are* very real harms from patients using homeopathy instead of real medical care.

Oh, bloody hell. Don’t you think I know that that leaving a disease untreated can be result in harm? This post was about long term antibiotics for Lyme disease, not homeopathy. My point was that, unlike homeopathic remedies, which (usually) do not in and of themselves cause harm other than leaving a disease untreated, long term antibiotics can actively cause harm through catheter sepsis, selecting for resistant bacteria, C. diff colitis, etc. Do I have to trot out a paragraph about how homeopathy can cause harm through leaving a condition untreated every single time I mention homeopathy in order to avoid a comment like yours?

I don’t mean to be so irritated, but this is a pet peeve of mine, how, if I don’t spend an inordinate amount of verbiage explaining issues like this every post in which a topic is mentioned a reader is almost always bound to take me to task about it. Aren’t my posts long enough already?

Impossible not to sympathize with the people seeking any answer, especially one with treatments. Thanks for highlighting that aside from draining these people’s money with false hope, selling them these fake treatments also imposes risks with no benefits. So sad.

In addition to harm from unnecessary prolonged antibiotic treatment, the diagnosis of serious medical conditions may missed if a patient is diagnosed with “chronic lyme disease”.

For example, a few years ago a letter, describing how patients with serious illnesses were misdiagnosed with “chronic lyme”, resulting in a delay in appropriate treatment, was published in JAMA Internal Medicine. One of the patients had acromegaly, one had Hodgkin’s disease, and one had lung cancer, in each case, the patients were initially diagnosed with “chronic lyme”. In reality, 2 of the 3 patients never had lyme in the first place, in the other case, persistent symptoms probably due to lung cancer were incorrectly attributed to previously treated lyme. So failure to diagnose a real, serious medical condition, leading to a delay in treatment, is another serious harm caused by the “chronic lyme” myth.

I can imagine the same thing happening with other fake diseases, like adrenal fatigue. It’s easy to imagine someone with undiagnosed sleep apnea, for example, being told by a naturopath that they had “adrenal fatigue”, and as a result perhaps never being diagnosed with and treated for their sleep apnea.

Somehow I missed that article. Got a reference?

What never ceases to amaze me is how quacks can diagnose patients with “chronic Lyme disease” when they’ve never been in an area where they might have been exposed to disease-bearing ticks. It happens all the time. Truly “chronic Lyme disease” is so protean that it doesn’t even need the possibility of exposure to the etiological agent! Maybe it’s distance infection!

I have the distinction of having caught Lyme on three different occasions, in three different parts of the East Coast – in fact, my first infection was just outside of Lyme, CT (when I traveled back home & saw my doctor at the time, he was proud of the fact that he got to diagnosis the first case of Lyme in Tennessee – regardless of where I had gotten it in the first place, lol).

Each time, the infection was taken care of with a standard course of antibiotics over a period of several weeks.

No chronic symptoms, no need for months of antibiotics – it was handled quite well by conventional treatments.

I’ll also point out that Lyme is now endemic in nearly 1/2 of the country – and while we can vaccinate our pets for it, there is no longer a Lyme Vaccine on the market. It was anti-vax pushback and an over-hyping of potential side effects of the vaccines that both manufacturers pulled them off the market in the late 1990s.

I, for one, would definitely love to get a vaccine back on the market & from what I’ve heard, there is a promising one in Stage II clinical trials right now.

@Lawrence-I haven’t ever had Lyme, but with the amount of exposure to ticks I’ve had over the years, I’m kind of surprised I haven’t.

Here in Maine, there is another, more dangerous tick-borne disease that you have to worry about as well-Powassan virus. It can cause encephalitis, and there is no specific treatment for it, nor is there a vaccine. There have already been two cases of Powassan in Maine just this year.

Orac @#10-Yes I know. One of the patients described in the JAMA article I linked to above “lived in an area where Lyme disease is rare, reported no history of erythema migrans, and had negative Lyme serologic test results”, and yet was STILL diagnosed with “chronic Lyme (he actually had stage IV Hodgkin’s).

“Chronic Lyme” does exist in one form – long term, untreated real Lyme infection.

I happen to know a couple of people who found out, much later in life, that they had been infected with Lyme, years before – but never had it treated.

After regular antibiotic treatment, they were able to clear the infection, but the long-term damage done by the disease could not be undone.

Excellent overview as usual Orac, thanks.
For anyone looking for good general science based information on ticks, their diseases and how to deal with ticks should visit URI’s Tick Encounter web site.
http://tickencounter.org/

there are many known complications to long term antibiotic treatment

I am aware that “complication” isn’t the right word for this, but isn’t one of the risks of long-term antibiotic treatment the development of antibiotic resistance in pathogenic bacteria? I’d be happy to have somebody explain why I am wrong on this point, because this is the point in the OP at which I said to myself, “Oh [bleep].”

I wonder how many ‘chronic Lyme’ patients and ‘Lyme literate’ doctors there are in the actual area of Lyme, CT (spanning several towns including Lyme, Old Lyme, East Lyme…). My guess would be ‘not many’ since there’s so much knowledge there about real Lyme disease. I used to live in East Lyme, and when you move in you get immediate instructions on avoiding the ticks and spotting the symptoms (inc. bulls-eye rash) because the ticks are all around, the treatment is easy if you get it in time, and the disease can get very nasty if you don’t.

It seems as if ‘chronic Lyme’ and ‘adrenal fatique’ are just names pulled out of a hat of vaguely plausible names for a similar set of symptoms. Is this the same as ‘chronic fatigue’, and is that equally fake, or is that just a name for a collection of symptoms without assuming there’s some identifiable underlying disease?

I wonder if there are any demographic breakdowns for individuals who suffer these chronic mystery illnesses, whether they tend to be more prevalent among folks with certain lifestyles or from certain subcultures. I guess I’m attracted to the premise that there may be a psychological and/or physiological component related to the stresses of modern (or postmodern) everyday life – like the bug isn’t B. burgdorferi but suburban geography or consumer capitalism or something like that. I’m thinking here of the excellent film Safe by Todd Haynes with Julianne Moore, which I’d recommend to anyone who hasn’t seen it…

On an almost, but not completely, off topic side effect of “Lyme literate” scams and their hazards –

Mark Crislip (because the world needs more Mark Crislip) had a post at https://sciencebasedmedicine.org/lyme-testimony/ about how “Lyme literate” physicians are working to pass laws in various states to ‘protect themselves from investigation of misconduct based solely on treatment that is not universally accepted by the medical profession’, or as he calls it in his podcast (QuackCast) a ‘Quack Protection Bill’.

It should probably go in the What is an “altie”? post, but it seems that those who can’t bring scientific evidence turn to the courts and the legislature to give their scams an air of legitimacy.

Well I get tested next week for Lyme. I just got over two days of fever, aches, and headache and I normally would not be concerned about Lyme’s but I have pulled 6 ticks, that were embedded, off of me since the start of June. Two were very small, what I would call a deer tick, the others were what I would call a wood tick or hubcap. I feel fine now, so hopefully not Lyme’s but I got two capsules of doxycycline and we’ll wait for the test results to proceed.The NP said it takes 14 days from the first tick bite to show up in the assay. No rash that I could see and I don’t believe any of the ticks were very engorged so we’ll see. My sister-in-law is a big believer in things like gluten sensitivity, leaky gut etc. I’m not saying anything to my brother about this or I’ll get some essential oil in the mail to cure me.

The worst part was if I hadn’t left what is now Sanofi when I did, I could have gotten their OspA vaccine, which was identical to Lymerix (which prompted a lawsuit IIRC), as I would have been doing testing on manufacturing and clinical samples. Though I can’t remember if boosters were recommended, so may be a moot point.

Sadmar @19: In a 2010 survey of Connecticut primary care physicians, 6 ( 2.1%) of 285 respondents said they diagnosed and treated patients for presumed chronic Lyme disease. 48.1% were undecided as to whether chronic Lyme existed and 49.8% did not believe in the existence of chronic Lyme.

All 6 of the survey respondents were not “Lyme literate”:

Five of the 6 physicians treated patients with chronic Lyme
disease for <6 months; one physician treated patients with
chronic Lyme disease for 12 months. No physician commented
that he/she used intravenous antibiotics to treat patients
with chronic Lyme disease. Thus, the physicians we
identified who diagnose chronic Lyme disease and treat patients
with it differ from ‘‘Lyme literate’’ physicians because
the ‘‘Lyme literate’’ physicians treat hundreds of patients
with chronic Lyme disease each year, with months to years
of antibiotics given orally or intravenously. ‘‘Lyme literate’’
physicians did impact our study, because 159 of the 279 physicians in our groups 2 and 3 reported that many of their primary care patients were diagnosed as having chronic Lyme
disease by other physicians, and some of these patients were treated with antibiotics intravenously.

It appears the Lyme literate are mostly naturopaths, chiropractors, and alternative/integrative/functional medicine physicians.

[email protected]: That SBM post is about two years old. It does sound like scary legislation, because depending on how the law is worded, a prohibition on “investigation of misconduct based solely on treatment that is not universally accepted by the medical profession” might effectively mean that medical malpractice is not actionable in that state. Crislip didn’t provide the full text of the law, and IANAL in any case, but a big chunk of law is all about the sort of pedantry Orac dislikes.

Yes, the SBM post is 2 years old, but the ‘problem’ is still out there. Earlier this year, Iowa signed in a Lyme doctor protection bill https://www.lymedisease.org/iowas-lyme-doc-protection-bill-signed-governor/

Other states have or are considering these ‘Quack Protection Bills’, including New York, Maryland, Virginia, Pennsylvania and others. They all have one thing in common – you can’t investigate a doctor for malpractice if the treatment of Lyme goes bad.

It make you wonder why they think such laws are necessary.

Needless to say, Australia has a cohort of Chronic Lyme wannabees, convinced that the tick species found on the local marsupials house a local pool of B. burgdorferi. The Australian medical establishment is conspiring to suppress this fact, abetted by the researchers who refuse to find the spirochete when they check the local ticks.

We have a local case who purportedly contracted Chronic Lymes six years ago by touching a kangaroo while visiting Oz.
http://www.stuff.co.nz/national/health/8616294/Kangaroo-cuddle-almost-kills-Ruby

She pops up regularly in local charity crowdsourcing, raising funds for treatment in the US. She always improves while she is over there in the care of the Lyme-Literate doctor, but inevitably deteriorates again after returning to NZ, and to the care of her mother. Who’s a Registered Nurse.
Yeah right.

To take my statement about those without scientific evidence turning to legislation and the courts completely off topic, this popped up – http://www.cnn.com/2017/06/21/health/vaccines-illness-european-court-bn/index.html

EU court: Vaccines can be blamed for illness without scientific evidence

(CNN)The Court of Justice of the European Union ruled Wednesday that courts may consider vaccines to be the cause of an illness, even in the absence of scientific evidence confirming a link.

The EU’s highest court said that if the development of a disease is timely to the person’s receiving a vaccine, if the person was previously health with a lack of history of the disease in their family and if a significant number of disease cases are reported among people receiving a certain vaccine, this may serve as enough proof.

Growing up I had a family friend who was a lovely, intelligent, spunky lady. She also fell for every single medical woo under the sun. (I learned early how to spot some obvious signs of a quack from listening to her stories about her latest ‘doctor’.)

We moved away and I hadn’t seen her in a long time when my mom told me that our friend had sent out an email asking for help paying for her “chronic Lyme” treatments.
Orac had *just* had a post about chronic Lyme, so I told my mom that this was yet another case of our friend getting suckered.

About a year ago my mom told me that our friend had died. She was pretty young (<50) and I wondered if it was all the woo that did her in, or if all the woo had covered up a real illness that had gotten her in the end.

if the development of a disease is timely to the person’s receiving a vaccine, if the person was previously health

CNN report sounds like Google Translate.
My understanding of the Court of Justice ruling is that they were not overruling a verdict from the French Court of Appeal. France’s Court of Cassation (i.e. their Supreme Court) had invited the EU body to suggest some guidelines as to what evidence might be relevant in such questions of liability.
Their suggestion doesn’t seem unreasonable to me… in the absence of evidence establishing or excluding a mechanism by which A might cause B, courts are entitled to consider recurring temporal proximity (though it’s up to national legal systems).

If CNN spins this as “EU court: Vaccines can be blamed for illness without scientific evidence”, I guess they care more about the headline than the facts.

Court of Justice ruling is available here, in the language of your choice. It seems clear enough. French courts had already concluded that temporal proximity can be admissable evidence… if, for instance, the number of people developing Condition X after receiving Treatment Y was significantly higher than would be predicted from the incidence if X and Y on their own, this would count, even if the mechanism were unknown. But in this case the evidence of this form provided by the plaintiffs was not sufficiently persuasive.
Then the EU Court affirmed this principle. To put it another way: Epidemiology is a science, and courts can consider epidemiological evidence.

CNN headlines this as “without scientific evidence” because they’re illiterate eedjits. I rather suspect that the writer found a French tabloid report, ran it through Goofle Translate, and plagiarised the output without even noticing the solecisms. She certainly didn’t read the ruling itself.

Cruel of me, but I suspect undiagnosed depression or personality disorders afflict many of these chronic Lyme sufferers.

This subject always gets me grinding my teeth.

A few years ago, a student asked to do her final presentation in our capstone course on Lyme disease. Being aware of the woo surrounding it I warned her not to bring pseudoscience into my classroom. I told her she could do a presentation on the disease itself, not the woo.

Of course she ignored me completely. I was livid. After her presentation, I told the class that none of what she had told them was supported by any medical evidence.

Probably wasn’t the way to handle it. I was pretty angry. I wanted to give her a failing grade on the presentation, but it was a group project and my teaching partners disagreed with me. Actually I did give her one, in essence, but since the scores on the rubrics were averaged, she still got an A on the project.

Of course she cried and said I was being mean to her because her prime case example was her brother . . . she even showed pictures of him with his porta cath.

I hate these quacks. I really do. This kid is going to get c diff sooner or later, or get septic because he’s becoming resistent to every thing.

It makes me crazy that no matter how hard I tried to teach SBM to my nursing students, they believe what they want to believe.

Cruel of me, but I suspect undiagnosed depression or personality disorders afflict many of these chronic Lyme sufferers.

I don’t know that it’s cruel, necessarily, although it smacks of thinking of depression or psychiatric disorders as insults, which is pretty cruel. (Depression is rarely used as an insult, as far as I’ve noticed, but accusations of personality disorders are often thrown around that way.*)

Armchair psychiatric diagnoses are generally pretty brain-dead, though.

*I see it a lot, even among friends. My good friend Robin has written of borderline personality disorder, “if you’re married to it [sic], run far away.” I mean, sure, he has his experience, but that’s pretty dehumanizing of people who have BPD. A friend of mine from grad school has pretty severe BPD; she’s not in grad school anymore – she’s struggled a lot over the past few years, seemingly since her “grandbuddy,” whom she was very close to, died – but she’s gainfully employed, sober, and has been living with her girlfriend for about a year now. They seem very happy, at least as far as I can tell.

I live in an area where you can catch Lyme even in your local park (there has been research conducted and in some parks more than 1/2 of ticks can transmit the disease). So tick repellents are the thing and fortunately so far I’ve managed to avoid them.
A friend of mine, though, has been diagnosed with late-stage Lyme several years after he’d been bitten by a tick. He’s undergone the standard therapy but some sequelae still remain. And my, he’s encountered so much woo surrounding it. Lyme-literate doctors, herbals, homeopathy, you name it. I send him such articles as this from time to time, hopefully he won’t succumb to woo.

@Jane Ostentatious#30: The same though, seems to be true by definition for those who suffer from another similar “disease” called Morgellons.

So here is a typical member of the Chronic Lyme grifting ecosystem: “Nordic Laboratories”, who pimp spurious blood tests for UK numpties who already know what they want to have and will pay good money for validation. Their Copenhagen address turns out to be a mail-forwarding service upstairs from the amber shop and the Shanghai Chinese Restaurant. Despite the Scandiwegian stylings of austere efficiency and rectitude, “Nordic Labs” are in fact one of several scams run by an alt-health supplements-&-vitamins pill-mill in Sussex.

So here’s the Alt-health Scammer-in-Chief gloating over his customer base of desperate barmpots who will keep shopping around for tests until they find someone who will validate their self-diagnosis:

Chris Moore, Managing Director of Nordic Laboratories, ascertained very quickly that of the 100 or so patients in the room, only around one-fifth had actually received a positive laboratory test. Yet these patients are living in the tatters of lives torn apart by the symptoms of Borrelia infection and all of them had to seek (and fund) their own treatment because nothing is available on the NHS. He made the point that times have changed. Patients are now very informed and know a lot about their own health and are looking to their doctors for support, not dismissal. After outlining the problems in detection of Borellia with current laboratory tests and introducing new technology, he illustrated the severe socio-economic repercussions of delayed or misdiagnosis with actual case studies.

I wonder what Orac makes of stories like these out of Canada?
http://www.cbc.ca/news/canada/montreal/lyme-disease-canada-1.4131705

Some regions in Canada are known for having had real cases of lyme disease go undiagnosed in patients for weeks or months (or longer) because recognition and awareness were very poor in certain places until more recently.

Then we have the problem of “chronic lyme” being an obvious pseudoscience that has been on the rise within the same time period as the increasing awareness of real lyme cases.

There’s a lot of confusion about lyme in Canada now, as it’s hard to tell where the actual delayed detection of real cases ends, and where the bunk begins.

The first google hit for “lyme disease Canada” yields this:
https://canlyme.com/
… a chronic-lyme-promoting, pseudoscience-drenched organization that appears to have capitalized on the confusion surrounding actual missed diagnoses of true lyme cases.

My friends and neighbours are terrified of contracting lyme disease now, and it’s hard for locals here to get reassuring, science-based information on the subject.

Any thoughts?

There are a number of other fake “diseases”, that are recognized only by quacks, out there. Many quacks are obsessed with so-called “candidiasis”, and will claim that a ridiculously large number of people have this fake “disease” (I’ve seen some alt-med people claim that 1 in 3 people has a so-called “yeast problem”).

Of course, real systemic candidiasis occurs almost exclusively in immunocompromised patients, is life-threatening, and produces severe symptoms nothing like the vague, nonspecific symptoms that they claim candidiasis causes, but of course they ignore those inconvenient (for them) facts.

Like chronic lyme, adrenal fatigue, and most other fake diseases, the symptoms of supposed “candidiasis” are extremely vague and nonspecific.

“Multiple chemical sensitivity” is another good example of a fake disease, and while I’m not sure if most patients who think they have chronic lyme actually have mental health problems, I’m quite sure that that is the case for patients who believe they have “MCS”.

So-called “electromagnetic hypersensitivity” is very, very similar.

In the case of both of these fake diseases, the real problem is likely mental illness.

A friend who is Woo Positive almost died recently from her chronic lyme ozone treatments. Did she question her pursuit of specious treatments, ummm, no. Of course she moved on to C.L. from adrenal fatigue.

Doctors Dietrich Klinghardt and Marco Ruggiero — previously the lucky recipients of Respectful Insolence — have their snouts in the Chronic Lyme trough, because it is such a scam-magnet.
http://thescipub.com/PDF/ofsp.11074.pdf

Uses “Autonomic Response Testing” — Klinghardt’s rebranding of the old ‘applied kinesiology” fraud — to provide the desired diagnoses, and “therapeutic ultrascanning” (!!) as a cure.

Are there any charlatans who do not have their snouts in this trough?

Bonus Lyme scamming! Because everyone wants to read about as many Lyme-related charlatans as possible.

Drs Klinghardt & Ruggiero also outsource their Lyme testing to “DNA Connexions”, a Colorado company, whose proprietory PCR methods can be relied upon to confirm the results of Klinghardt’s applied kinesiology. ‘DNA Connexions’ has a Dr. Blanche Grube as owner, and a Dr. Christopher Shade as Lab Director.

Shade’s primary business interest is “Quicksilver Scientific”, one of the many Mercury Detection clinics — he sells mercury tests (and the usual scammocopoeia of supplements, and Hemp Oil), and directs customers to Grube’s dental clinic to have their fillings removed (after he detects the amalgam in their bloodstream).
Grube is also Biocomp Laboratories, and sells a “blood serum procedure […] Biocompatibility test, a comprehensive report that simply states whether the dental materials are Highly Reactive, Moderately Reactive, or Least Reactive.”

All sounds legit!

So there are patients with “fatigue, generalized pain, and neurologic disorders” who have “experienced significant debilitation from their symptoms” and who have “not found relief after consultation with conventional medical practitioners.”

Should we call ‘chronic Lyme’ a ‘fake disease’ or a ‘fake diagnosis’. This seems to be a case where people are genuinely suffering, their doctors can’t tell them why, and charlatans pop up to bilk them by providing the comfort of an all-encompassing explanation. Once the grift and it’s ideology have been established, it then sucks in other folks, who may have lesser concrete issues, but still find the fake diagnosis a useful covering excuse for whatever. So we might say these folks do have a ‘fake disease’. Then finally, a few of the tragic cases Orac describes, where patients who could have found relief with conventional medical practitioners get sucked into the quackery by visiting a Lyme literate grifter MD to begin with.

If we want to reduce this sort of quackery, or just quackery in general, we need to understand why people turn to it. In an econ analogy, attempts to restrict supply won’t work unless we can reduce demand. The reality is, if people are suffering from fatigue, pain, and neurological issues, they’re going to embrace the ‘best’ available plan to get better, even if it’s a dubious plan… and for that core ‘chronic Lyme’ that isn’t MS or some other identifiable physiological condition, ‘Lyme literate’ BS gets to be the best plan because it’s the only plan.

That’s why I second JP’s note that looking into psychological factors shouldn’t be considered cruel at all. It seems there are people out there who really need help. If they’re barking up the wrong tree, it would behoove a caring medical culture to help them find the right tree. But, as JP parses in Jane’s comment, Oh No!, psych factors are still way to stigmatized! Can’t go there!

Mustn’t forget the egregious Sin Hang Lee, a regular recipient of Respectful Insolence, who was pimping a magical PCR DNA test for Chronic Lyme before he branched into “detecting DNA in Gardasil” as a secondary income stream.
http://respectfulinsolence.com/2011/09/06/oh-no-theres-dna-in-my-gardasil/

So a few years ago a totally grass-roots organisation sprang into being, the Coalition Against Lyme and Related Borrelioses (CALRB), mainly for the purpose of bombarding the Massachusetts legislature with a series of press releases, all about the need for more widespread use of PCR techniques to detect Lyme Disease in everyone. Specifically, Sin Hang Lee’s test.
http://www.businesswire.com/news/home/20140804005753/en/Hartford-State-Capitol-Host-Kind-Scientific-Lyme
http://www.businesswire.com/news/home/20141201005220/en/Lyme-Disease-Ebola-Diagnosed-DNA-Sequencing
Its job complete, CALRB vanished back into the quantum fluctuations from whence it came.

Imagine my surprise, then, to find that the President and executive director of CALRB, one Kevin Moore, also holds the role of “Media Relations Director for Milford Molecular Diagnostics Laboratory”… which is to say. he’s Lee’s business partner / press agent. While the domain for the now-vanished CALRB website had been registered by Jessica Vigliotti, Lee’s lab employee and co-author on his mockademic publications.

I am just impressed by the sheer shameless of these scammers, and the lack of effort they put into hiding their trail of slime.

Just when you thought it was safe to wave away “Chronic Lyme”, the existence of which I more than doubt as much as anyone here, this link showed up in my inbox: https://www.statnews.com/2016/10/12/swiss-agent-lyme-disease-mystery/
Apparently, Hans Burgdorfer thought that Rickettsia helvetica might be concurrent with Lyme or confused with it. There’s more to the story there. I was not familiar with the journal in question, but a little overflight suggests that it’s fairly solid.

Why am I suddenly on moderation?
Was I songraphulating?
Did I say something that turns out to be obscene in Finno-Ugaric?
Has some younger and less rockin’ imposter stolen my nom de net?

[email protected]
I realize this can be a touchy subject for many doctors,but failure to diagnose is a very real thing,and a big money maker for many malpractice and personal injury lawyers.Patients want answers,and want to know the causes for their symptoms,and will turn wherever they can to get whatever answers they can to get.Most patients are not savvy enough to figure out what is BS or woo,with no basis in science.

A lot of these may be people with very real symptoms,who have been told they were hypochondriacs,somatizing,or had Munchausen’s,from doctors who still party like its 1969.So as a result they turn to woo-meisters ,who provide them with some “scientific sounding” answers,and sympathy.

Many of us with very rare diseases have been where these patients are too,and spent years fighting with doctors,for a diagnosis and treatment,before we were eventually diagnosed,in my case through whole exome sequencing,Too few doctors know what to do when faced with a patient with an undiagnosed rare disease,and the undiagnosed are a growing patient advocacy group.The NIH Undiagnosed Diseases Program has expanded greatly in recent years,and in 2015,added six additional hospitals to handle all of the patients and families who applied.

This is familiar and aggravating territory. My SIL had non-specific physical complaints that were resistant to medical detection and she was referred to psychiatry, which she rejected vigorously. Then into the woo-pit, Igenex confirms Lyme, Dietrich Klinghardt can save her where noone else can and many tens of thousands of dollars later, she is no better off and Dr K won’t see her. She can’t use any muscles, needs to be fed, etc unless under acupuncture. With the needles in she can walk, exercise, etc until they are pulled out and then back to incapacity. She has had bad reactions to long-term antibiotics, taken MMS, European neural injections, Rife Machine, the list is long and expensive (of course).
IMHO and knowing her history, she desperately needs some good therapy for depression and anxiety but she will do anything rather than that (or ‘western’ medicine).

There is sufficient evidence, you just refuse to see it. Hence your mocking tone. It doesn’t help your credibility.

Chronic or Late Lyme Neuroborreliosis: Analysis of Evidence Compared to Chronic or Late Neurosyphilis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551238/

“The substantial amounts of data available in the literature show that the major forms of late/chronic Lyme neuroborreliosis (meningovascular and meningoencephalitis) are clinically and pathologically confirmed. Borrelia burgdorferi was detected in association with tertiary brain lesions and cultivated from the affected brain or cerebrospinal fluid. The accumulated data also indicate that Borrelia burgdorferi is able to evade from destruction by the host immune reactions, persist in host tissues and sustain chronic infection and inflammation. These observations represent evidences that Borrelia burgdorferi in an analogous way to Treponema pallidum is responsible for the chronic/late manifestations of Lyme neuroborreliosis.”

I dunno, Sabine. Miklossy suspects that the initial antibiotic treatment is not always enough to wipe out a Lyme infection, so that in many cases, the symptoms decribed as “post-Lyme” are in fact manifestations of late-stage (tertiary) borreliosis. In such cases a more thorough course of antibiotics may be appropriate.

But she is not addressing the putative though ill-defined “chronic Lyme disease” as exploited by the LL grifters, or defending the long-term IV treatment they prefer; instead, she explains, she is using “chronic Lyme” as a synonym for “late Lyme”. In Miklossy’s words:

Importantly, the existence of late Lyme disease is approved by all official guidelines in the U.S., Canada and Europe. The terms “late” and “chronic” Lyme disease, as in syphilis, are synonymous and define tertiary Lyme disease [20.125]. The use of “chronic” Lyme disease as a different entity is inaccurate and confusing.

I have to point out that the paper in great need of proof-reading, and in the very first paragraph we read “Failure to detect Treponem apallidum“. But that’s what you get from a predatory journal from Bentham Open.

@Sabine,

How many of these chronic Lyme patients have been diagnosed by a neurologist with paresis and have tested positive for Lyme spyrochetes in the spinal fluid?

If that were true in even a significant number of these cases, we would be studying which antibiotic is most effective in killing them, not worrying about killing the patient by long term treatment with antibiotics for organisms that aren’t there.

Sabine’s “authority” is the same Judith Miklossy who proclaimed in 2011 that Alzheimer’s disease is caused by “chronic spirochetal infection”.

She appears to have spirochetes on the brain (sorry).

This editorial might be interesting if it wasn’t for Dr Neil Spector and other highly acclaimed doctors who have contracted chronic Lyme disease and are now speaking out, not to mention the science from Johns-Hopkins showing how Borrelia burgdorferi can’t even be eradicated with doxycycline under ideal conditions. Doctors are so clueless when it comes to Lyme disease, even Spector’s own hospital, Duke, with all the resources at their disposal, left him to very nearly die since none could diagnose him correctly, preferring to diagnose him with a “stress disorder”. I guess “stress disorder” is “evidence-based” lol. Talk about woo!

Spector is 100 times the doctor Gorski will ever be, and he now travels the country raising awareness about how poorly the CDC and IDSA have handled this disease, which in his case, could have been treated with $100 of antibiotics, but instead was ignored (as Gorski seems to prefer) and ended up costing millions in risky treatment including a heart transplant. I guess that’s a better result for the medical industry, hospitals and doctors, but not so much for patients, health insurers and tax-payers. Spector’s Lyme disease tests repeatedly came back negative, so I’d love to hear an explanation of how that can occur when your heart is riddled with spirochetes to the point of needing a heart transplant.

Ridiculing middle aged women with chronic Lyme disease is easy sport for Gorski, but people like Spector and others are much more difficult to ridicule, since Spector has achieved more in academic cancer research and cancer therapies than Gorski ever will. Gorksi seems to think having a blog somehow elevates his status as a physician, but it really does the opposite. A larger megaphone doesn’t make you correct.

Spector’s credentials are beyond reproach, and he directly blames the CDC and IDSA for their dogma leading to so much misery, suffering, expense and death, including very nearly his own and is doing what he can to see it changes.

Why doesn’t Gorski write an editorial on Dr Neil Spector, and ridicule him and other esteemed doctors with chronic Lyme disease rather than taking pot shots at sick patients for his private enjoyment? Why not mock the dead people who suddenly died from Lyme carditis at the prime of their lives, whose doctors diagnosed them with “anxiety” or the “summer flu”? I mean, c’mon, if you are going to ridicule the very sick and dying, why not go whole hog and do it properly and include the highly acclaimed doctors and researchers who suffer from it rather than just middle aged women with no medical education or reality show stars? Is it because they aren’t as medically defenseless as sick middle aged women and reality show stars? Inquiring minds want to know.

@Trigger-First of all, I want to very clear about the fact that nobody here is denying that Lyme is a serious illness. Everyone knows that Lyme disease can be very serious if not caught early.

I am unfamiliar with Dr. Spector, but I googled him and found a page on the Duke University website that stated that he required a heart transplant as a result of lyme disease that went undiagnosed for years. The page on Dr. Spector specifically stated “Eventually, the Lyme disease was cured, but his heart was permanently damaged.”, so he did *not* state that his heart was “riddled with spirochetes” after receiving apprpriate antibiotic treatment, rather, the spirochete caused damage to his heart that persisted despite the eradication the spirochete.

You understand the difference, don’t you? Based on what I read, using Dr. Spector’s case to suggest that lyme disease patients should receive prolonged/indefinite antibiotic treatment would be like saying that, if someone had HSV encephalitis 10 years ago and suffered brain damage, they should get acyclovir to treat the brain damage.

The bottom line in both cases is that just because the pathogen is gone obviously does not mean that the damage it caused will disappear-that’s really obvious, and you should be able to understand that.

BTW, lyme carditis is rare. Only 7 deaths from lyme carditis were recorded between 1985 and 2013. Untreated lyme is much more likely to cause neurological problems than it is to cause carditis.

@Trigger-Also, he didn’t “ridicule” anyone in this post-rather, he described cases in which patients were seriously harmed or killed by unnecessary antibiotic treatment for a disease they did not have. The “middle aged women” mentioned in this post were VICTIMS of quackery, and were not in any way “ridiculed” in this post.

@55
“Everyone knows that Lyme disease can be very serious if not caught early. ”

Well clearly that’s not true. Some people know this, but the CDC and IDSA claim its “hard to catch, easy to cure, everything’s wonderful, blue skies, la dee da” and thus requires no funding. Over 300,000 people will get Lyme disease this year, and the NIH budget for it is $21 million. You can’t claim its being taken seriously with such little funding, which it would be if “everyone knows that Lyme disease can be very serious if not caught early”.

Which of course raises the question, how do you “catch it early” before it progresses to the later stages as it did in Dr Spector’s case? He had all the medical resources you could possibly want to “catch it early”, and lived in an endemic area, yet it took a decade to diagnose, and he ended up diagnosing himself after the penny finally dropped. His repeated CDC tests kept coming back negative, even though the CDC claims its highly sensitive in long term cases. Why didn’t his long term case get a positive test result? Is that just an inconvenient fact to be ignored?

He ended up suffering from Lyme induced arthritis, but coincidentally happened to be prescribed doxycycline for something unrelated, and soon after, his arthritis remitted and he finally put 2 and 2 together when no one else could. So good luck to your average Joe on the street getting accurately treated early. The CDC test is useless until weeks after you are infected, and even then the test is highly flawed. People have died from Lyme carditis that have received a negative test. If you can die from Lyme carditis, confirmed at autopsy, and you still test negative, you can’t claim the test is effective.

The CDC test looks at proteins that aren’t even relevant to Bb, and ignores the proteins that are. Read the paper by Ma et al that the CDC uses to justify their test where the relevant proteins are listed, and then look at the CDC surveillance criteria and the proteins their test uses, and you’ll see that Ma’s relevant proteins and the CDC Lyme test proteins don’t match. That’s been done either on purpose, or is the height of incompetence, take your pick.

Even if you are lucky enough to get a rash, it may not occur for a few weeks after infection, too late to now be “caught early”. If you do get a rash quickly enough following infection for it to be caught early, it will often be diagnosed as a spider bite, ringworm, allergic reaction to a tick bite, or simply ignored. Now your therapeutic window has closed.

What you say about Spector’s heart makes no medical sense to me. What process was occurring to his heart to cause damage once cured of Lyme disease? Are you claiming that Bb can magically damage your heart long after its gone? I’d love to see the research there. Any credible citations regarding this mysterious process of heart damage sans infection?

They are finding Bb spirochetes in animals and patients that have been treated with antibiotics for months and even years in some cases. One patient even transferred Bb to a naive feeding tick after CDC recommended treatment. Love to hear you explain that one.

If Dr Spector can fall prey to this infection, with all the knowledge and resources at his disposal, it should hardly be a surprise that so many patients are claiming the same thing without anywhere near those resources. I guess Gorski never ventures outside, but for those of us that do, its clear none of us are immune to this, just like Dr Spector found out. The hard way.

I admit was glib about mental health in my earlier comment. Probably because I suffer from depression personally and in addition my family resembles Mr.Rochester’s first wife’s (literary allusion). My warped sense of humour has got me in trouble before.

I firmly believe some people may have undiagnosed Lyme (diagnosis is a bitch), others may have unidentified as yet diseases or syndromes​ and yet others refuse to accept that their physical problems are a result of their mental health. Feel free to hate me, everyone. Please take a number.

“Even if you are lucky enough to get a rash, it may not occur for a few weeks after infection, too late to now be “caught early”. If you do get a rash quickly enough following infection for it to be caught early, it will often be diagnosed as a spider bite, ringworm, allergic reaction to a tick bite, or simply ignored. Now your therapeutic window has closed.”

False. Later stage Lyme disease is often treated successfully. And if “your therapeutic window has closed”, how does that justify massive long-term antibiotic doses prescribed by “Lyme-literate” doctors?

https://www.uptodate.com/contents/lyme-disease-treatment-beyond-the-basics

I can understand resentment towards the CDC and IDSA for not caving in to demands of patients who’ve been convinced they have “chronic Lyme syndrome” and the politicians that pander to them. These organizations are to be commended for standing up to outside pressures and endorsing evidence-based guidelines for diagnosis and treatment of Lyme disease.

“There is no well-accepted definition of post–Lyme disease syn- drome. This has contributed to confusion and controversy and to a lack of firm data on its incidence, prevalence, and path- ogenesis. In an attempt to provide a framework for future research on this subject and to reduce diagnostic ambiguity in study populations, a definition for post–Lyme disease syndrome is proposed in these guidelines. Whatever definition is even- tually adopted, having once had objective evidence of B. burg- dorferi infection must be a condition sine qua non. Further- more, when laboratory testing is done to support the original diagnosis of Lyme disease, it is essential that it be performed by well-qualified and reputable laboratories that use recom- mended and appropriately validated testing methods and in- terpretive criteria. Unvalidated test methods (such as urine antigen tests or blood microscopy for Borrelia species) should not be used.
There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic ( 6 months) subjective symptoms after recommended treatment regimens for Lyme disease.”

https://www.idsociety.org/uploadedfiles/idsa/guidelines-patient_care/pdf_library/lyme%20disease.pdf

Woo-natics like Trigger’s disconnection from ordinary notions of time and causality never cease to amaze.

Nobody here suggested that Lyme disease can continue to damage the heart muscle after it’s cured. If it has gone untreated for a long time, however–even after it’s cured (There is no such thing as “chronic Lyme disease”!)–the damage has already been done. Eliminating the infection will not go back in time and reverse the damage that has already occurred. Only alt-med weirdos have the ability to reverse time! Or so they think.

Thanks Dangerous Bacon, I’m more than familiar with the decades-old conventional thinking from the CDC and IDSA that has allowed a small, manageable problem turn into an immense problem. Simply copying/pasting medical dogma doesn’t really prove anything. The IDSA was sued for their incompetence and conflicts of interest when it comes to Lyme disease if you are not aware. They didn’t fight the lawsuit, oddly enough, which they certainly would have had they felt they had a good chance of winning. I mean, they have all the science on their side don’t they? Should have been a slam dunk for them, yet they wouldn’t even proceed to discovery.

If you can explain this anomaly, I’d love to hear your opinion. Looking at Ma’s paper which the CDC testing criteria is based on, it says this:

“The proteins regularly detected by using samples from patients with Lyme borreliosis were those with bands with molecular masses of 94, 83, 75, 66, 60, 55, 46, 41, 39, 34, 31, 29, 22, and 17.”

The CDC test criteria says this:
It was recommended that an IgM immunoblot be considered positive if two of the following three bands are present: 24, 39, and 41.
It was further recommended that an that IgG immunoblot be considered positive if five of the following 10 bands are present: 18, 21, 28, 30, 39, 41, 45, 58, 66, and 93.

Typically MDs won’t even look at the IgM result if symptoms have been present more than a few weeks since the CDC says its leads to too many false positives, so we are left with IgG testing.

Ma’s proteins:
17,22,29,31,34,39,41,46,55,60,66,75,83,94
CDC proteins:
18,21,28,30,39,41,45,58,66,93

See the problem here? The only proteins the CDC test uses that Ma says show up in the blood of patients with Borreliosis are 41 and 66. Many of the others the CDC is using aren’t even specific for Borrelia, and according to Ma don’t appear in Borreliosis patient’s blood.

The CDC isn’t even using the bands for their test that their own research says are relevant. Is that fraud, incompetence, a typo, someone had a bad day or what?

As well, the CDC won’t allow a lab to report bands 31 and 34, yet Ma says that when 31 and 34 show up in tandem they are highly specific for late-state Lyme disease. By ignoring bands 31 and 34, that misses all the late-stage cases like Spector’s. That would go a long way to explaining why people who have died from Lyme disease still get a negative CDC test.

“If it has gone untreated for a long time, however–even after it’s cured (There is no such thing as “chronic Lyme disease”!)”

Huh? How can a disease do damage when it goes untreated for a long time, and yet not be a chronic illness? Perhaps you have a different definition of what chronic means than I do, but as far as I’ve been taught, the definition of chronic is something like: “persisting for a long time; applied to a morbid state, designating one showing little change or extremely slow progression over a long period.”

Plus that doesn’t answer the question why Spector got negative Lyme disease tests despite having the disease go untreated for many years. According to the CDC, the CDC test is more sensitive the longer you’ve been infected, but clearly that’s not true in this case, along with many others like Kris Kristofferson and others who are well known enough to have public health details. Even Allan Steere, Willy Burgdorfer and Alan Barbour’s papers, among many others talk about “Chronic Lyme” so perhaps you should take that up with them. It doesn’t really sound like you’ve looked into this much.

The IDSA was sued for their incompetence and conflicts of interest when it comes to Lyme disease if you are not aware. They didn’t fight the lawsuit, oddly enough, which they certainly would have had they felt they had a good chance of winning. I mean, they have all the science on their side don’t they? Should have been a slam dunk for them, yet they wouldn’t even proceed to discovery.

Are you talking about the 2006 case? Because, well, this happened –

http://www.idsociety.org/Lyme_Review_Panel_News_Release/

A few selected quotes (holding mine)-

“The guidelines, voluntarily used by physicians to help them decide what treatments are best and safest for patients, were the subject of an antitrust investigation begun in 2006 by Connecticut Attorney General Richard Blumenthal. Blumenthal examined whether the guidelines’ authors had conflicts of interest and failed to consider divergent medical opinions. IDSA maintains those assertions were unfounded and, as part of an agreement to end the Attorney General’s investigation, voluntarily agreed to a one-time special review of the guidelines by an independent scientific Review Panel whose members were certified to be free from any conflicts of interest by an independent ombudsman.”

“To ensure a fair and unbiased review of the 2006 guidelines, IDSA and the Attorney General jointly selected an ombudsman, Howard Brody, MD, PhD, an author and respected medical ethicist at the University of Texas Medical Branch. Dr. Brody screened all potential Review Panel members for conflicts of interest using criteria jointly approved by the Attorney General and IDSA. The Review Panel was comprised of nine scientists and physicians from relevant disciplines who had not served on any previous Lyme disease guidelines panel.”

“The Review Panel concurred that all of the recommendations from the 2006 guidelines are medically and scientifically justified in light of the evidence and information provided, including the recommendations that are most contentious: that there is no convincing evidence for the existence of chronic Lyme infection; and that long-term antibiotic treatment of “chronic Lyme disease” is unproven and unwarranted. Inappropriate use of antibiotics (especially given intravenously) has been shown to lead to deadly blood infections, serious drug reactions and C. difficile diarrhea, as well as the creation of antibiotic-resistant bacteria or “superbugs.” ”

” This special review validates the recommendations, which are again proven to be based on the best science available,” said Dr. Whitley. “Our number one concern is the patients we treat, and we’re glad patients and their physicians now have additional reassurance that the guidelines are medically sound.” “

Thanks for the quotes, but I was expecting something without such obvious bias. Simply pasting the defendant’s press release is hardly convincing of anything. I thought this was a science related blog, where facts and science are what matters not opinions by defendant’s attorneys. I don’t really put much credence in what Bill Cosby’s lawyer says either.

I’m very puzzled why the IDSA didn’t go to court over this though, easily win on the science (since there’s no convincing evidence as you say) and then get the plaintiff to pay all their court costs when they win. Seems like a no-brainer to me…if you actually have the science to back it up.

I have to think the IDSA or their attorneys didn’t feel they could win on the merits, and were on too shaky ground to go to court over it, so they immediately settled even before a lawsuit was filed, which is highly unusual in an antitrust case, which are typically very hard to prove. Apparently, they didn’t even follow the settlement agreement like they were supposed to, so it seems the IDSA has no problem playing fast and loose with the rules which is not encouraging.

If they aren’t even willing to defend their own science, which they adamantly claim is very defensible, why would they expect anyone else, especially people whose health is going to depend on it, to have any trust that its valid?

The IDSA was sued for their incompetence and conflicts of interest when it comes to Lyme disease if you are not aware. They didn’t fight the lawsuit, oddly enough,

What would be useful and convincing here is a link to the filing details and court records for this purported lawsuit.

Trigger, you dumbsumbitch.

The IDSA didn’t need to go to trial. They agreed, with the blessing and agreement with the Attorney General who prosecuted the suit, to conduct a review of everything the woo-meisters claimed was wrong with their guidelines, conducted by people with no skin in the game, and it was found that the guidelines were just fine the way they were.

But maybe you disagree. So you tell us what changed as a result of the lawsuit “which they certainly would {contested} have had they felt they had a good chance of winning”.

And just in case you can’t, I’ll tell you – freakin’ nothing.

Well, for those who insist an IDSA press release must be wrong, here’s a published article citing the same facts:

https://academic.oup.com/cid/article/51/1/1/297544

And a health news website reporting on the settlement of Blumenthal’s “case” against the IDSA which involved conducting the review of its Lyme guidelines:

https://www.healio.com/infectious-disease/emerging-diseases/news/print/infectious-disease-news/%7Bf1c3a406-74b4-4261-9c88-bbb3ac200623%7D/connecticut-attorney-general-idsa-settle-lyme-disease-case

The facts are not in dispute, except perhaps among the Lyme Conspiracy crowd. The IDSA guidelines stand, and continue to be ignored by “Lyme-literate” doctors who make money by exploiting their patients.

We of the pro-tick lobby are terribly unhappy with articles like these at what is for us a sacred time of the year. In late springtime we cavort naked through beautiful fields of tall grass and commune with our arachnid brothers and sisters. In the evening, naked still, and with many pairs of tweezers, we engage in the fun mutual grooming game of “find the tick”. A wonderful game in which even if you find no ticks you still can win.

@Dangerous Bacon

“The facts are not in dispute, except perhaps among the Lyme Conspiracy crowd. The IDSA guidelines stand, and continue to be ignored by “Lyme-literate” doctors who make money by exploiting their patients.”

That’s simply not true.

The Institute of Medicine and AHRQ’s National Guideline Clearinghouse disagree with you and this is why the IDSA guidelines for Lyme Disease have been removed. They are outdated and non-compliant with Institute of Medicine (IOM) standards and the GRADE system for rating evidence.

The ILADS guidelines for Lyme Disease were published in 2014, are compliant with the IOM standards and GRADE, and have been accepted and published by the National Guideline Clearinghouse.

The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines
https://peh-med.biomedcentral.com/articles/10.1186/1747-5341-5-9

Also, Dr. Miklossy is an MD and is board certified in neurology, psychiatry, and neuropathology. In addition, she is the director of the International Alzheimer’s Research Center.

If you want to label her a crank, that’s your choice. But it shows one thing: you’re more interested in character assassination than any facts.

Hi Jane O.

No hate here. Fwiw, my comment wasn’t directed at you, really but at a much larger ideological current I took you to have perhaps unwittingly played into. After all, as I’d guess we both know, it would indeed be cruel to wish depression or anxiety order on anyone. But what’s more cruel, of course, is the stigma that leads the suffering away from getting help, and leads people to treat them as ‘less than’ if their treatment becomes known. Anyway, by “glib” I think you mean you were trying to inject a note of self-reflective irony, and that makes sense if you’ve struggled with depression at all. NP. Also, fwiw, I don’t necessarily think the mental health issues that may be behind the symptoms diagnosed as CL AF etc. are textbook depression or anxiety disorders. I don’t really have a guess as to what pages of the DSM might be involved. I’m just guessing that the physiological symptoms some of these folks are experiencing are the result of projection of some repressed psychic tension, which could be anything from childhood trauma to profound alienation from modern/post-modern everyday life, c.f. the Haynes film Safe I mentioned earlier.

Anyway, we’re chill, and stay Ostentatious!

I realise that I’m late to this particular “party”, and long time, no see etc, etc, for which I apologise – but this story makes me feel particularly livid. People are actually having Hickman Catheters funnelled into their chests by Quacks for arguably vague, but quite possibly real symptoms of other actual conditions? It’s outrageous to me that a 30-something year old woman had an indwelling catheter for patently ineffective long-term antibiotic treatment whether it be a PICC, Hickman or a Broviac.

It goes without saying that septic shock isn’t fun – even if you happen to survive it and didn’t need to be placed under sedation and intubated while in ICU. I hope the survivors and families concerned name and shame these practitioners in Court – but I’m not going to be holding my breath. The woo-entranced frequently worship these revolting charlatans against all odds, at least in my experience.

@Sabine Massal: a very nice article, written by 2 people with documented conflicts of interest to the IDSA guidelines. Yeah, I’ll take that.

An appeal to authority is nice, too. Dr Miklossy is NOT certified in infectious disease. I’m sure in her areas of specialty, she is quite good, and I’d be happy to read her information on Alzheimer’s. But, just as an oncologist wouldn’t treat a heart attack victim, I won’t trust a neurologist for Lyme disease.

Perhaps someone should inform the IDSA and the CDC that IDSA’s diagnosis and treatment guidelines are “outdated” and “have been removed”, as they remain posted and in effect.

https://www.cdc.gov/lyme/treatment/guidelines-explanation.html

Not surprising that a society like ILADS (which promotes long-term antibiotic therapy for “chronic Lyme disease” would tout its own recommendations instead, or that quacks who treat “chronic Lyme” would endorse its recommendations.

Is it just me or are chronic-Lyme quacks remarkably hostile compared to, say, the homeopathy supporters? I’d say they’re roughly on the level of the anti-vaxxers when it comes to superiority and insult.

It’s hard to keep the “Quack Constellation” straight, because if you look at all of their different treatments & beliefs, most of them are actually diametrically opposed to each other….

@74 Man Called True
I’ve been re-reading some of the Chronic Lyme related articles/comments here and over at SBM in recent days. I would agree with the higher levels of hostility and inability or unwillingness to take on new information (such as rats and petri-dishes not being humans, that none of us deny Lyme disease being real, etc)

Lol….pathetic comments. Are you all in fifth grade? Reminds me of recess in elementary school. I’ll leave you all to it…

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